Posts Tagged ‘Health’

A few weeks ago, the New York Times has a thoughtful piece on patients sharing their data online to push for more efficient research. Dr. Amy Farber, after being diagnosed with a rare but deadly disease called LAM, founded the LAM Treatment Alliance and LAMsight, “a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.”

In a completely different arena, we also had news that Google Maps is using GPS information from mobile phones to improve traffic data. Google had used data from local highway authorities for traffic data on major highways, but now, GPS data from users of Google Maps with the My Location feature will provide data for local roads as well.

Pretty exciting stuff. Crowdsourcing isn’t new. But thus far, it’s been used mostly for things that are subjective. Like Hot or Not. Customer reviews. It’s also been primarily voluntary. You choose to write a review and shared your data. Or if it’s involuntary, it’s not something that is accessible to the public (e.g. search results, credit card data, mortgage data, etc.).

What’s exciting now is that we’re starting to get into discussions about crowdsourcing for stuff like

Medical research – where people are trying to extract objective conclusive results from data.

Traffic data – where data is automatically collected (opt-in/opt-out, whatever) and made available to the public.

The two most common objections are around the supposed inaccuracy of self-reported data and the privacy risks of providing so much individualized information.

No one expects that observational research using online patient data will replace experimental controlled trials…“There’s an idea that data collected from a clinic is good and data collected from patients is bad,” he said. “Different data is effective at different purposes, and different data can lead to different kinds of error.”

The issue of privacy is a little trickier. Google says you can opt-out of contributing your data easily, and Google promises that even those who contribute data can trust that their data will remain anonymous, “Even though the vehicle carrying a phone is anonymous, we don’t want anybody to be able to find out where that anonymous vehicle came from or where it went — so we find the start and end points of every trip and permanently delete that data so that even Google ceases to have access to it.”

There are certain to be some people who won’t feel comfortable with Google’s promises. Yet I doubt they will have much impact on Google’s ability to deliver this service. The bigger issue for me is how privacy may be holding back smaller, less established players from developing potentially valuable services based on crowdsourced data collection?

In other words, is our currently ad-hoc and unsatisfactory approach to privacy inadvertently stifling competition by making it nearly impossible for startups to compete with the establishment wherever sensitive personal information is involved?

What data would you like to gain access to that might face similar privacy challenges?

“It’s what we do. Our corporate mission is to organize the world’s information and make it universally accessible and useful. Health information is very fragmented today, and we think we can help. Google believes the Internet can help users get access to their health information and help people make more empowered and informed health decisions. People already come to Google to search for health information, so we are a natural starting point. In addition, we have a lot of experience storing and managing large amounts of data and developing consumer products that offer a positive and simple user experience.”

I thought their mission, as a corporation, was to maximize profits for their shareholders.

The answer to Question #6 is even worse:

“Much like other Google products we offer, Google Health is free to anyone who uses it. There are no ads in Google Health. Our primary focus is providing a good user experience and meeting our users’ needs.”

But we all know that “other Google products” that are free make money through advertising. And there are “no ads in Google Health”?

In launching Google Health, Google has clearly acknowledged that health information is even more sensitive than the personal information the company has been assiduously collecting up to this point. Although it glosses over the differences between its other applications and Google Health, promising to “conduct our health service with the same privacy, security, and integrity users have come to expect in all our services,” the mere fact that it doesn’t have advertising trumpets that Google is trying to differentiate Google Health from something like Gmail.

But the harder Google tries to assure me that there is no advertising and that the service is free, the harder it is for me to believe there are truly no costs to me. Clearly, there is a real value to providing secure online access to personal health records. Medical records, for the appropriate people, should be accessible, transferable, and plain legible, as anyone who has tried to read a doctor’s handwriting can attest. So why would someone give me something for nothing?

According to the Wall Street Journal, Google is not ruling out advertising in the future, and in the meantime, it hopes Google Health will simply drive more users to Google in general. Perhaps Google itself doesn’t quite know where Google Health will go. But given how easy it is to imagine nightmare scenarios of what can happen with this kind of information, I want the company who’s collecting it and storing it to have a better story about why it’s doing this.